Two new medications to treat Alzheimer’s disease—Leqembi and donanemab—have burst onto the scene in the past year. But new research cautions that access to the drugs likely won’t be available for all who need it.
The warning comes from a study, published in August in the journal Neurology, identifying how factors like socioeconomic status and race can impact Alzheimer’s disease care. The findings show that Black Americans and people living in less affluent neighborhoods were less likely to be seen at specialty memory clinics.
The underrepresentation at these clinics—which are a major point of access for new Alzheimer’s disease treatments—means that many patients may struggle to receive necessary memory-preserving treatments.
“Dementia care is going through a major transformation right now,” study co-author Suzanne Schindler, MD, PhD, an associate professor of neurology at the Washington University School of Medicine in St. Louis said in a news release.
“With these new therapeutics, getting evaluated at a specialty clinic early on—when symptoms first develop—is going to be important in a way that it never was before so that eligible patients can have access to these treatments,” said Schindler. “Our study suggests that we must seek out ways to ensure that the distribution of these new treatments is equitable.”
Here’s what experts had to say about the barriers Black Americans and people in less affluent neighborhoods face when it comes to accessing Alzheimer’s care, and what can be done to address these stark inequities.
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The new study centered on one memory clinic—the Washington University Memory Diagnostic Center in St. Louis, Missouri—where researchers wanted to investigate who was actually making use of the clinic.
“I have noticed that we have a relatively lower rate of Black patients compared to the St. Louis area, and also that many of the Black patients that I see are coming in to be evaluated once they have more advanced symptoms of dementia relative to white patients,” Schindler told Health.
Schindler is a dementia specialist and sees patients with memory and thinking problems in the St. Louis area. Her colleagues noticed the same issue—a lower rate of Black patients at the clinic—and the team decided to look at medical records to see if the data aligned with their personal experiences.
Between 2008 and 2018, 4,824 patients visited the memory clinic, and researchers compared those records against data from the neighborhoods surrounding the clinic.
The results “confirmed what we had seen anecdotally,” Schindler said—Black patients were generally “underrepresented” in the clinic. The general neighborhood population was 16% African American, but only 11% of the patients who visited the memory clinic identified as Black.
The study also found that, of those Black patients who sought memory care at the clinic, they were more likely to present with moderate or severe dementia as compared to white patients.
People who went to the clinic were also more likely to come from more affluent neighborhoods with fewer Black residents, a higher average median income, and a higher average education level.
Health disparities in Alzheimer’s disease have been evident for decades and threaten the diagnosis, treatment, and disease outcomes for underrepresented communities.
“Minoritized groups like Black individuals and Hispanic individuals are more likely to have dementia,” said Schindler. “It’s not clear the exact amount, but in some studies, they may be 50% to 100% more likely to develop dementia.”
Studies have shown that, for the U.S. population as a whole, Black Americans are about 1.5 to 2 times likelier than white Americans to develop Alzheimer’s disease and related dementias. And yet, Black participants in Alzheimer’s disease studies were 35% less likely to be diagnosed with the disease, compared to white participants.
The reasoning behind these higher rates of Alzheimer’s and fewer diagnoses is complex and multifaceted—institutional racism, social attitudes and beliefs, and even biological differences may all play a role.
Race-Specific Risk Factors
Historical discrimination and marginalization can take a toll on the bodies of Black Americans by exposing them to chronic stress throughout life. When institutional racism is thrown into the mix—which can impact the living conditions, finances, and employment of marginalized people—health disparities can be compounded.
“Individuals in neighborhoods that are less affluent are less likely to have access to good medical care, and so they may not be referred to see us,” said Schindler.
“If you live further away [from a clinic], if you have had harmful encounters with the healthcare system—or even one particular hospital or academic medical center—that means that you never get access to that care,” Paris Adkins-Jackson, PhD, MPH, assistant professor of epidemiology and sociomedical sciences at Columbia University Mailman School of Public Health, told Health.
These less affluent neighborhoods may also have higher rates of pollution, which is considered a risk factor for dementia.
The risk of Alzheimer’s disease and related dementias may increase with comorbidities that affect the heart and blood vessels, like heart disease, diabetes, stroke, high blood pressure, and high cholesterol. Data shows Black Americans are more likely than white Americans to have most of these conditions.
Barriers to Diagnosis and Treatment
Non-white people have historically been excluded from research of any kind—which then inhibits diagnosis rates, treatment options, and even accessibility issues.
“A lot of the [diagnostic] tests have been developed in almost exclusively white populations,” said Schindler. “We don’t really know if these tests work the same way in everyone.”
The same goes for new treatments tested in clinical trials.
“[The] clinical trials for Alzheimer’s disease treatments have had a very low rate of inclusion for Black individuals in particular,” said Schindler. “We’re basically just testing these drugs in white individuals with higher levels of education that are relatively healthy, and we don’t know how these drugs work in individuals from different backgrounds.”
Accessibility issues surrounding new Alzheimer’s drugs Leqembi and donanemab highlight this: Because the drugs were tested on smaller groups of people with less advanced disease progression, it’s only intended for people with early-stage Alzheimer’s—Black patients, who are often diagnosed later on in their disease, may not be eligible to take the medications.
Certain symptoms of Alzheimer’s disease may also be more common in Black people. When comparing Black participants versus white participants, research has shown that Black patients with Alzheimer’s disease and related dementias were twice as likely to demonstrate delusions or hallucinations, compared to white patients.
Black patients were also likelier to have symptoms like agitation, aggression, or irritability; loss of inhibitions; motor disturbances; and sleep, behavior, and eating changes. These differences in symptoms can delay diagnosis or lead to misdiagnosis.
In Alzheimer’s disease and related dementias specifically, it’s important to meet people where they are in terms of information—that may mean better messaging around symptoms and treatment options for some marginalized communities.
“One of the biggest issues that we’ve been tackling—outside of structural and systemic issues—is just being able to recognize the symptoms,” said Karen Lincoln, PhD, MSW, professor of environmental and occupational health and director of the Center for Environmental Health Disparities Research at the University of California, Irvine’s Program in Public Health. “African Americans, despite having the highest risk, have the lowest levels of Alzheimer’s literacy.”
“The idea [is] that dementia is just a normal part of getting older—it’s not, but people sometimes have that expectation,” added Schindler. “That’s one reason why people don’t present when they first develop symptoms, because they think, ‘Oh, I’m just getting old.’”
Text message campaigns or talk show presentations based on Alzheimer’s information have been shown to boost that knowledge, said Lincoln.
Memory care clinics and healthcare institutions also have to intentionally include less affluent patients and patients of color, Adkins-Jackson said.
These care centers should also be located in areas where people of color and people with lower socioeconomic statuses can access them, and they should prioritize hiring healthcare providers of color to make patients feel more included and comfortable, added Schindler. The same goes for hiring more community health and social workers for outreach.
“We have to be more aware of the ways the structural determinants bleed over into our private lives,” said Adkins-Jackson. “We have to take more systemic level changes to do something about that because the individual is not enough.”